So, it finally happened. After 4+ years of saying proudly “nope, never been hospitalized since diagnosis, yeah I mean never” when various random medical persons asked, and getting that puzzled look like we were a unicorn they had never met before, we went down in DKA flames today and landed ourselves in the PICU. 15 year old with two days of soccer camp in the heat + badass viral GI bug with 12 hours of copious vomiting and no fluids staying down…well you know the end of that song. But this is not actually a post about that. My son spent only a few hours on an insulin drip, his numbers are all fixed and it will be in the rearview mirror by tomorrow night. This is more about my reflections, all day long today, about how profoundly different the healthcare system (US, I should clarify) is experienced by different patients. Here’s what happened to us in the last 24 hours:
Kiddo started feeling sick at dinner last night. Also started spiking for no apparent reason. I got home from work, instantly detected impending badness and geared up for battle (full disclosure I’m an MD not in the diabetes field, but most of my useful knowledge is just diabetes mom know how). All evening/night long I used our omnipod, dexcom and generous supply of novolog, paid for by our insurance, to titrate up boluses every 1-2 hours and push fluids by mouth trying to get ahead of the bad bugs and the barfing. By morning we were still running in the high 300s despite genuine horse doses of insulin (I went through a 200 unit reservoir in a day, people. Was giving 14 units an hour at peak and it was going in, just barely holding him). We were in our endo’s office at 8am. This is the “good docs” part of the story. This woman is amazing. She said we would try to fix it in her clinic, took up a room for 3 hours so we could get IV fluids, zofran, phenergan, did everything she could to keep us out of the ER. While we waited she was telling us about a talk she went to from the Nightscout folks, dissing the current Medtronic system for not being easy enough to use and talking about the next generation of loop systems. Anyway when his pH stayed stubbornly at 7.2 with a tanking bicarb, some nice aide from the clinic wheeled us down to the ER the “back way”, helped us through the metal detector, and our MD had called the triage nurse ahead about us. Of course being in the ER sucks but they let us keep doing our insulin via omnipod and running fluids, trying to get us home. when THAT didn’t work, nice pediatric ICU folks came and adopted us, started a two-bag insulin drip, numbers all better 8 hours later. Here comes the “bad doc” (really, bad hospital/nursing) part…night nurse comes in and announces they are going to transition him off the drip to Lantus and subq novolog because they are “not allowed to touch the pumps”. My kid is WEARING a pump and they are about to give him Lantus, at a wild ass guess dose because he has not had any in four years, because they can’t figure out how to write directions for dosing novolog. When they know he is going home in 12 hours. If there were an emoji for eyes rolling til they got stuck in the back of my head, it would go here. So of course we said, “whatever you say the doctor said ma’am, go right ahead.” Uh, NO, we do not. Told my husband (of course they do this while I’m getting dinner) to refuse the Lantus, and texted our endocrinologist, whose cell number I’ve had for four years and never used it, for emergency backup. Turns out she fights this fight with the ICU commonly, and generally loses, but because we were advocating for ourselves and the ICU probably was hesitant to ■■■■ us off, she and the oncall fellow called and did battle and got ICU to agree to let us use our pump. So my kid is saved a bunch of subq pokes and exposure to a new medication he doesn’t need. Clearly our endo is getting the good fruit basket this Christmas…
But here is why i came home sad tonight (never fear, my husband is still there taking his turn on guard against medical insanity). Not because my kid had a brief bad day while getting excellent lifesaving medical care or because I am short a night of sleep, but because I am totally sure we got better care than so many families who (1) have crappy or no health insurance, (2) never got taught how to recognize, try to prevent, or seek treatment for DKA while it’s early, or don’t feel brave enough to try; (3)can’t get to a good doctor ASAP when they start barfing in the middle fo the night; (4) haven’t been empowered by communities like FUD to know an idiotic idea when they hear one, even if it’s coming out of the mouth of a medical professional, and ask questions or advocate for themselves; (5) don’t have the cell number of somebody who will go to bat for them when they need a heavy. Yes, I am a good mom. But there are plenty of good parents out there whose kids don’t get the care my kid gets because the cards in their healthcare system hand are different than mine. No kid should get “less” diabetes care because of the hand they drew. It should not require a battle to get rational patient centered medical care. Just not fair. Bleh.
Also, clearly there are “good” and “bad” parts in the system. Many smart caring medical people going the extra mile for their patients, who are as frustrated by the complexity as we are. Today reminded me to thank the ones who do, and to be careful in praising or criticizing broad groups. (Which FUD is great about)
I don’t post a lot, but I read faithfully. Thanks to all of you FUD regulars for helping me to become confident and knowledgeable enough to put my foot down when needed. Keep fighting the good fights!